Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study

Buchbinder, Mara; Blue, Colleen; Rennie, Stuart; Juengst, Eric; Brinkley-Rubinstein, Lauren; Rosen, David L

BACKGROUND: Retention in HIV care is critical to maintaining viral suppression and preventing further transmission, yet less than 50% of people living with HIV in the United States are engaged in care. All US states have a funding mandate to implement Data-to-Care (D2C) programs, which use surveillance data (eg, laboratory, Medicaid billing) to identify out-of-care HIV-positive persons and relink them to treatment. OBJECTIVE: The purpose of this qualitative study was to identify and describe practical and ethical considerations that arise in planning for and implementing D2C. METHODS: Via purposive sampling, we recruited 43 expert stakeholders—including ethicists, privacy experts, researchers, public health personnel, HIV medical providers, legal experts, and community advocates—to participate in audio-recorded semistructured interviews to share their perspectives on D2C. Interview transcripts were analyzed across a priori and inductively derived thematic categories. RESULTS: Stakeholders reported practical and ethical concerns in seven key domains: permission and consent, government assistance versus overreach, privacy and confidentiality, stigma, HIV exceptionalism, criminalization, and data integrity and sharing. CONCLUSIONS: Participants expressed a great deal of support for D2C, yet also stressed the role of public trust and transparency in addressing the practical and ethical concerns they identified.